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Diary

Sarah Rigby

Last week I walked home from Shepherd’s Bush Green. It isn’t far – people who come to visit say it takes them about ten minutes – but it felt like a considerable achievement. I haven’t been able to walk that far since I’ve lived in this part of London. It wasn’t just that I could cover the distance – at a push I could have done that six months ago – but I didn’t have any pain in the days which followed, which was an indication of how much I’ve improved. Two years ago, when I first moved here, I couldn’t comfortably walk from one room of my flat to another, and when I tried to ignore the pain and go further, it always got worse.

At that time I didn’t make a link between using muscles in the normal way and the pain in them increasing. In fact, I had very little idea what was happening to me. For three months, taking increasing amounts of medication, I’d been struggling to live normally, but just after I moved my GP suggested that I stop taking painkillers, which he felt were dangerous if used for an extended period. Without them, I had to stop working. Every step I took sent waves of pain up the right-hand side of my body (for some reason the pain was always worse on the right side) and I had severe and constant headaches in my temples and at the base of my skull. The other symptoms I’d had since having flu in March continued: swollen glands, a constant sore throat, night sweats, dizziness, bowel disturbances and temperature fluctuations – I was also unusually thirsty, hungry and tired. I was sleeping for about 14 hours a day but was exhausted while I was awake; I was eating more than usual but within three weeks had lost a stone and a half in weight, and couldn’t put it back on for more than a year. Later I developed blurred vision in my right eye, tinnitus in my right ear and recurrent insomnia. More frightening than any of this was the fact that I found it very difficult to concentrate: when I tried to read, or to listen to the radio, I often couldn’t keep the meanings of the words in my mind for long enough to make sense of a sentence.

Unless they’ve known someone with the condition, most people wouldn’t recognise these as symptoms of what one consultant I saw described as a ‘textbook case’ of ME, or Chronic Fatigue Syndrome. In the last few years the illness has attracted a great deal of publicity – partly because it’s still very controversial, partly because it affects so many people (approximately 150,000 in the UK). There’s disagreement about what the condition should be called, about how many people have it, about whether there are subgroups within the Syndrome, but most of all about what it is and whether or not it exists. Many people I meet have a view on whether it’s a genuine illness or not, but strikingly, hardly any of them even have a clear idea of its symptoms. The three most common opinions about ME are that it doesn’t exist at all, except in name; that it just involves feeling slightly more tired than usual; and that it’s a psychological illness.

The Chief Medical Officer, Kenneth Calman, announced on 16 July that a new working group is to be set up to help GPs deal with ME, which he recognised as ‘debilitating’ and ‘a real entity’. This should go some way towards dislodging two of the more common assumptions from the minds of doctors, though public opinion will be slower to change. The third – that ME is a psychological illness – continues to be contested. Matthew Hotopf, of the Institute of Psychiatry, recently described ME as ‘a grey area’. Appearing on ITV’s Link, Hotopf said: ‘The main thing about ME is that it cannot be understood by any single biological or psychological mechanism. You have to have an integrated approach which takes both into account.’ On the same progamme, Ellen Gouldsmit, a psychologist with a special interest in ME, argued that ‘we must start distinguishing between the various fatigue syndromes. The literature doesn’t make sense if you treat CFS as one disease ... The evidence is overwhelming that it isn’t. There are some groups where physical factors like the immune system are involved, and they’re not being looked at.’

Letters

In her account of her struggle to overcome chronic fatigue syndrome (CFS), Sarah Rigby (LRB, 20 August) suggests that a recent article of mine in the Guardian ‘silently contradicted’ the views of Elaine Showalter. In fact there is no contradiction between the research I described in the Guardian and the position taken by Showalter in her book Hystories or in the Diary she wrote for the LRB. Our work showed that the majority of those who come to a specialist clinic such as the one I run at King’s College Hospital do indeed come from the professional classes. Nearly all believe they are suffering from myalgic encephalomyelitis (ME), and many do not fulfil established international criteria for CFS. An illness which preferentially affects the successful middle classes is inherently implausible, and provides the basis for Showalter’s critique. However, when we looked outside the clinic, we found the opposite. Operationally-defined CFS was more common in lower socio-economic groups, but most of those affected did not use terms such as ME to describe their illness. There is thus no discrepancy between our epidemiological studies of CFS and Showalter’s historical analysis of ME – we are describing different constructs and concepts, so it is not surprising that we reach different conclusions.

Simon Wessely (Letters, 17 September) now claims that he sees a distinction between ME and CFS, two years after his instrumental role in the Royal Colleges committee whose final report specifically (and, many felt, inappropriately) recommended that ‘ME’ should be renamed ‘CFS’. Even if he now makes a distinction between the two terms, he certainly did not do so in his Guardian article, on which I based my assumption that he disagreed with the position Elaine Showalter took on CFS and class in Hystories.

In that book Showalter suggested that, CFS, like neurasthenia, ‘was most commonly seen among the upper social classes’. In the Guardian, using the same historical parallel, Simon Wessely said that in Victorian times CFS was, ‘oddly enough’,

thought to be an illness that predominantly affected the upper echelons of society. So is it yuppie flu, then? The Victorians gradually learnt that it wasn’t, and we are slowly finding the same. My clinics do contain rather more teachers, doctors and nurses than one would expect, but when we extended our studies to general practice and the community we found that CFS was common in all social classes.

In his letter Wessely suggests that in his Guardian article he was writing about CFS, and that Elaine Showalter had been giving an account of ME. In his article, however, he uses the two terms as though they were interchangeable, and writes under the title ‘No-name illness’. The only distinction he made between them was this: ‘ME is the term that dominates the clinic and the media, but doctors talk and write about CFS. Encephalomyelitis … is a misnomer while chronic fatigue syndrome is instead neutral … but is it, whatever we call it, new?’ The implication must surely be that he sees (or then saw) the two terms as different names for the same thing, not as ‘different constructs and concepts’, as he now claims.

In her book Showalter also used the two terms as though they were synonymous, noting that ‘ME’ is the name ‘used in the UK’. ‘Whatever the official definition or name of the syndrome,’ she went on to say, ‘doctors use it in lax and general ways.’ This last point certainly seems to be true, and it’s the reason for the British ME charities’ aversion to the term ‘CFS’, which they see as a large and unspecific category, consisting of many sub-groups with different causes and symptoms. Their point has usually been that as it is already widely used in Britain, the term ‘ME’ should continue to be used here until a more satisfactory alternative can be agreed on. However, neither Showalter nor Wessely mentioned sub-groups in what they wrote. The symptoms Showalter described, as well as her historical account of the illness, clearly indicate that she was writing about CFS as a whole and was not making the distinction Simon Wessely now makes in his letter. In print, if not necessarily in intention, there can be no doubt that Wessely did contradict Showalter’s views on this issue.